Friday, 24 February 2012

Call the midwife?

Does bubbling at Call the Midwife signify a remaining impact of illness, a descent into sentimentality in my old age or did it touch a very real truth for me? That's been this weeks question, among others. Maybe it's all three but I think the small speech around "as a nurse and midwife it is my role to alleviate pain and suffering", was the  part that especially moved me. It took me to a recall of why my former profession fulfilled and sustained me for many years. And why I have been so proud to call myself a nurse even when society still fails to value the nursing profession.

But it's also been the week when I have read again that nurses are having training in compassionate care. What can have happened that we need to retrain people in this when for many that will have been their initial driver for joining the profession? Is it failed leadership that values only administrative skills above those of care and compassion? Is it a culture that promotes organisation centred care rather than person centred that causes this? Is  it a lack of time or training? Seeing those nurses respond to the compassionate care training so positively and express how that enhances their job satisfaction says it all. I have no doubt the patients are reaping the rewards.


The Quality Strategy for health care in Scotland places compassionate care at the top of its priorities , with person centred care at the heart of this. I have been pleased to support work enabling this to become a reality in Scotland. In many ways facilitating this shift in culture was one of the reasons I moved to the voluntary sector , enabling a greater patient voice through advocacy ( like Breakthrough CAN) and Breakthrough Breast Cancer Service pledge . Also as Chair of the Long Term Conditions Alliance I know a collective voice can be a significant driver of change. So when I wistfully remember my days being called Sister( no not a Nun!) and wonder if I could perhaps return to nursing at some point when my work here is complete (mmmmmm.....) perhaps I need a pause to recognise that my role as Director of Breakthrough Breast Cancer in Scotland is perhaps the most powerful way to make a difference for many, and not only those with breast cancer too.


Also in a week when I have called the breast care nurse for advice I want also to recognise the importance of the nurse specialist role. People with conditions like breast  cancer and diabetes have for many years seen their care revolutionised by specialist nursing expertise. That combination of specialist knowledge alongside great communication skills offers the difference to so many, enabling them to understand ,accept and get to grips with their new reality. They are often the unsung heroes, not fitting neatly into boxes of frontline care but as care shifts from hospitals into community their role becomes more and more relevant and important. As resources become even more stretched lets ensure they are properly valued and protected.


So what made me phone this week? Some pre op advice really but also a recognition that my worry bug was taking hold. The 2 am shift had returned with descent into what ifs and surreptitious forays into google .....my fellow travellers will know this one! Daylight puts such fears back in the box thankfully and also feeling a little stronger is helping. On wards and  upwards now I hope.


Reasons to be cheerful. Feeling a little better has to be top of the list. I fear karaoke with the team is not going to be possible but I hope to get back next week and enjoy the banter afresh. My daughter is home soon and we had a real giggle at the clip on TV when she and her colleagues met Jedward during their regular dog adoption slot in Ireland. And two of the dogs already have new homes.
But finally this week our scientists have discovered valuable new information about hereditary breast cancer...http://bit.ly/wSv4yR this information ,on our website too ,brings personalised medicine even closer and hope for so many in the future. Now that really is a reason to be cheerful. Thanks so much to all of you who have helped to make that possible.






Sunday, 19 February 2012

Why I want us all to detect cancer early........

Hurrah I managed out today for a small foray around the local market. February sun in Edinburgh was sneakily deceptive but uplifting. Avocado hummus, sea bass, cheese and wonderful fudge purchases later and I returned home shaky but more optimistic of recovery. Not sure my purse will  recover however! A few days ago I had gone back to the GP ,who is consistently supportive and constructive , and was given treatment for an atypical infection and more steroids for asthma which finally seem to be working finally.  The size of the antibiotics is such that I questioned the mode of delivery(!) but as oral was the only one I was willing to consider, I am swallowing them ...eventually. My recent illness has awakened the demons of worry but my glimmers of recovery are helping to allay some of them. No one reading my blog could fail to see the impact of any cancer diagnosis no matter how early, but I will recover from this and my first experience taught me that this too will pass. Although my early diagnosis in my 30's was terrifying and did set me back , a stage 1 tumour treated with good evidenced based treatment and care means I am still fighting on many years later. My survival has meant I have seen my children grow up and become the fine people they are; bright, value based, committed , wise and loving. I couldn't be more proud of them. I have seen my step daughters' girls grow taller and prettier, with promise of much to come. We have shared many happy times and savoured them too. And I hope for many still to come. So why am I saying this today? It's because this week is the launch of the Detect Cancer Early campaign and I should have been there to help launch it but as I am still unwell ,I have had to concede defeat. I know it won't flounder without me but I would so love to have loaned my voice to the importance of this campaign. This of course for me is personal in a way. I am so fortunate but I also want that for everyone else, so its professional too.  Breakthrough Breast Cancer is committed to early detection as a key part of our strategy. We know that without this all of our other good work , researching and identifying personalised diagnosis and treatment could be in vain.We developed our award winning TLC and the http://ibreastcheck.com/ to enable women to know what to look for, how to touch , look and check with their doctor if worried and also with reminders of when because we know it can save lives. And many of the other cancer charities are as passionate about early diagnosis as we are, knowing how important this is to all our supporters. This detect cancer early campaign also wants to ensure people understand the benefits of early diagnosis and to understand that they won't be wasting a doctors time if they tell them about any concerns they may have. Not only do people need the information of what to look for but they do need to act on their concerns. And doctors also need to be fully informed and refer appropriately.  So it's a complex process of behaviours, processes, beliefs and services that allow cancer to be detected early. This initial campaign is an important first step. So this blog is my sofa bound way of supporting its aspirations and my way of doing what I can to disseminate these important messages. Do support it too however you can. Check out the Scottish government website for more details this week. Reasons to be cheerful have been hazy at times this week as I have coughed,wheezed and struggled to sleep. But I hope that as the week progresses my strength will return. The fabulous Breakthrough team plan another karaoke night at the end of the week to say a fond farewell to a team member. I do hope to go but I think it will be Barry White or Johnny Cash numbers for me! Oh and I am through to the final for the Institute of Directors award of Female Director of the Year. But more of that next time. But do you think I need a new dress?

Thursday, 16 February 2012

Blogging for Breakthrough post. Two women who inspire me.

90 bloggers blogging for Breakthrough Breast Cancer in 90 words about a woman who inspires them. How could I not rise to that challenge?Already doing my breast cancer blog and being a Director with Breakthrough Breast Cancer I thought long and hard about who to talk about. And we have so many supporters who inspire me daily. But as I thought about the challenge two special women came to mind . My daughter Catriona and my friend Marjory. So what do they have in common. Well other than enriching my own life , I see them daily go extra miles for their own missions in life. And as someone who cares for them I sometimes worry that they put aside their own needs to care for others. But then it's that quality that makes them so special. With wonderful giving qualities they make a difference with no thought for themselves. Such admiral qualities which inspire me and humble me in equal measure. They are not only committed in their professional lives but are also loyal and warm friends to those they care about. I will give the last word to Catriona. She was recently hand rearing some pups who because of a virus were not surviving. As a concerned Mum I asked how do you do it? Because I love them Mum she said. Indeed she does and it's the same driver for Marjory too. Thank goodness for amazing women like them. If you would like to blog for Breakthrough too ,see kateonthinice.wordpress.com. This initiative is helping to raise awareness of our work at Breakthrough, saving lives and changing futures for people affected by breast cancer.And supporting the fundraising work of Pink Ribbon Bingo on our behalf. Thanks to all of you for this great initiative and giving a voice to so many great women.

Monday, 13 February 2012

An alternative Valentines tribute

What love really is This is a mini blog inspired by a twitter conversation. I had sympathised with a valentines day rant by Ellen 27. You see we don't really do valentines in my house. Many things contribute to that. Partly it's just been my birthday and so opportunities to be showered with gifts (ahem..) have just been experienced and between then and valentines we have also celebrated my Mums and my daughters birthday. Yes you are right we are broke by now! But in general valentines cards make me barf and fluffy toys with pink hearts bring out my dark side. Overpriced and force fed cut flowers are a crime in so many ways. And all of the above as measures of how much you are loved are flimsy and transitory evidence. So we thought maybe a counter campaign of what love really is was ripe for the picking! So this is my tribute to my own special other half. Regular readers of my blog know we have had a challenging year and it's not yet behind us. Recently I have been struggling with a rotten chest infection and a bad case of can't get the bed off my back. So here are my thoughts given all of that is what love really is to me It's making my favourite soup when everyone else makes me cough It's putting up with Leonard Cohen on the iPod deck for the zillionth time It's singing Flower of Scotland with my Mum (they are both English!) And not laughing when we lose the rugby (again) It's knowing he's there for the kids, whatever it takes It's not going Duh! when I say maybe I have been over doing it It's saying I look lovely when I feel it least It's welcoming my friends in his life too It's not resenting the job when it takes so much of me It's making me laugh at the worst of times It's letting me cry at the worst of times It's not complaining when we have to change our plans again It's supporting me when I decide to have more surgery It's not flinching as I do when I see the prosthesis I need still to wear It's being there in the bad and the good times It's looking forward to celebrating the better times to come...

Friday, 10 February 2012

Audrey Birt's breast cancer blog: Yes we CAN!

Audrey Birt's breast cancer blog: Yes we CAN!: Right now I am propped up by four pillows and tapping on my iPad. Enforced bed rest to enable me to get my breath back literally means I am ...

Yes we CAN!

Right now I am propped up by four pillows and tapping on my iPad. Enforced bed rest to enable me to get my breath back literally means I am getting a bit bored. Admittedly this has given me time to reflect on my current state. And to make plans for my forthcoming surgery. Top decision is to ensure I have sufficient recovery time and perhaps this is my way to also give this whole experience the proper due care and attention. OK, OK I acknowledge that to date I have not done this, caught up with the message that it could be so much worse, I have denied the reality of impact on me and others  too maybe. Mea culpa. The comfort of denial is wearing off now. Mmmm

So my restless mind while in bed has meant I have been reading the newspapers and twitter and blogger news too with relish. What a rich combination that is and I have been struck by the issue around women's influence ( or lack of) in business or government at a senior level. Nothing new I hear you say...indeed but perhaps when the prime minister is acknowledging that quotas or indicative levels at least may be necessary to influence change in the board room we may be at a pivotal time. One I would urge us not to duck with platitudes of not wanting to patronise women.

  An opinion piece I read in the Scotsman from Joseph Nye of Harvard stated that more women in political leadership would mean better government. The evidence is already there for business when research has shown women in the board room lead to greater business success. But that evidence has changed little so far in terms of the numbers of women at that level.  Clearly , Houston , there is a problem that needs to be tackled in fresh ways. The status quo will deliver just that.

But there is a paradox in my world in a way. Women through successful campaigning and lobbying have managed to influence the care and treatment of breast cancer. I discussed this with a supporter recently who has sadly been diagnosed with secondary cancer more than  twenty years since her first diagnosis. She has been through a roller coaster of symptoms and emotions is clear that the sensitive care she has experienced alongside good information and shared decision making ,is so much better than before.

 Her previous bad experience led her to campaign to make it better for those who followed. It is poignant that she has now experienced the benefits of her work with others and on behalf of others. So many of us have generations of women to thank for better services now. And the men too want to learn from us and how women's collective voice has influenced change. At Breakthrough Breast Cancer our Campaigns and Advocacy Network (CAN) and Service Pledge volunteers give of their time to influence and campaign for change. Having been part of times when they come together , it is a moving and empowering experience. It's a heady combination of preparedness, keenness, care and solidarity. Also there is a strange quality of being a member of the club we are all part of .....but didn't want to join.

I witnessed similar strength when on the Moonwalk in Edinburgh. If someone had a stone in their shoe, well,  we stopped together to fix it, we queued at loos together, we shared plasters , we shared jelly babies (ugh ..never want another one!) and we celebrated achievement however slow a time. You can smell what I am cooking here... .?That doesn't sound like an ordinary marathon does it...and I am not talking fluffy pink bras either. I am talking about achieving something greater together for the common good. 

It struck me at a recent TV debate on Independence that the political landscape in Scotland has changed in so many ways but one of them was the prominence of women at a senior level now in Scottish politics. But the challenge for them is can they therefore use that influence to create a different discussion? Can we evoke a collaborative spirit that spurns polarised debate but creates an environment for reasoned argument and exploration of a better future, whatever it's hue? That's a big ask i know and it takes brave people to do things differently. Nelson Mandela famously said (quoting Marianne Williamson from Return to Love please note) "Our  deepest fear is not that we are inadequate . It is that we are powerful beyond measure. It is our light not our darkness that frightens us".

My experience shows me women do influence change and have been able now not only to achieve that for people affected by breast cancer but in other cancers and in the wider arena of healthcare too...changing the accepted norm for all. We just need to apply that learning and ability to other parts of our society but are we brave enough? I do hope so....

Reasons to be cheerful! I had a lovely birthday in spite of being poorly. Lovely gifts and a good time with people I love. Also i am planning a girly weekend with my daughter soon. We currently share a love of Zumba and some very very brave people in Angus did a whole 12 hours of Zumba to raise money for Breakthrough. Some of my colleagues went along to support the event and were in painful place on Monday.  Well done all for the courage to go the extra mile in every way you. It makes all the difference.

Friday, 3 February 2012

Truth and sustaining the soul...

Stabilising the soul, that's what I have just read from my notes from the Windsor leadership dialogue. Wow! My yearly trip to Windsor is one of my attempts to do that in a busy challenging life and this year has truly been that .I was armed with thoughts of talking about how my blog had helped my authenticity as a leader. But in fact I said little about it. Reactions to  my story remind me that it's hard sometimes to hear about some of the things I have experienced and the work I do. I have become used to talking about it but I need to be mindful of the impact on others too. 

And  since then I had to see my GP with a chest infection and asthma so bad it's put me in bed and led to a tearful episode not at all expected during the consultation! I think the sharing pays a price as well maybe? I have done a lot of travelling and long hours too....I need to get back to pacing myself. Ah well it's life long learning is it not?

What about telling the truth when it comes to cancer? Can we have too much truth? I can't hide from it now in my job and generally my approach is to analyse the far end of...well you know where I am going. But at times I have had a fact too many. First time around I completely blanked the fact that I may need surgery for a third time if the margins of the tumour weren't clear. Fortunately I didn't need it but I chose not to remember that one. I know many people experience similar amnesia. Sometimes we need to not have too much truth. How do you eat an elephant? One bite of the breast at a time!


When I started work at Breakthrough Breast CancerI learned for the first time how common late recurrence was becoming. This came as a shock as I guess I thought I was out of the woods for the first cancer. And of course I have recently had a new cancer.I have tried to push aside thoughts of recurrence knowing both times to be early stage but at times like this when I am unwell and vulnerable they crowd in...hence the tears. Only human after all....

One of the things we touched on in Windsor was developing our meta narrative
-telling our truth, our own story to serve our work and mission. It resonated for me and also relates to the invitation a blogger with Britmums put out as well. For 90 bloggers to blog in 90 words about special women to them in support of Breakthrough Breast Cancer and the fundraising work with Pink Bingo (there are 90 balls in play in Bingo hence the link). You find out more on Qhttp://kateonthinice.wordpress.com/2012/01/26/i-am-looking-for-90-bloggers-to-support-breakthrough-breast-cancer/

And yet another blogger did a fabulous and funny piece on our TLC work. Shows how well humour can open doors to challenging subjects too. You can read it here on  -How to feel a right tit AKA be breast aware t.co/LA5kaZnK via @Ellen27. 

It's World Cancer day tomorrow I believe. I had rather mixed emotions -no not mixed just negative if truth be told-as its also my birthday. (No not telling you!) Seemed a bleeping irony if you get my drift and not a connection I want to have with my birthday at all.  Considered re naming it F... Cancer day! and perhaps will hold on to that approach over the weekend.

Reasons to be cheerful are of course it's my birthday and I am subtracting and lying from now on too. Family are visiting and if I can drag my sorry self there we are going out for dinner together. My favourite times as you know. 
Perhaps this one shouldn't cheer me but this week we have also been giggling about fat cats. No not the ones that have lost knighthoods . Its Koshka who as a result of preferring a hibernation state is getting a bit of a belly! His bed is by the radiator and he can watch the TV from there. Earthflight is outright winner but if he starts on the football too I may have to leave home! Borgen remains my top TV tip. Wonder if I could pull off the tight  Mac look ,
like Brigitte?

And finally last words from a poem shared in Windsor. It really moved me...It's title is  lost. We touched several times on the dark nights of the soul in our discussions. I know I have had them and still do at times. Maybe this will give you comfort in your own dark nights.

Lost

Stand still. 
The trees ahead and the bushes beside you Are not lost. 
Wherever you are is called Here, 
And you must treat it as a powerful stranger, 
Must ask permission to know it and be known. 
The forest breathes. Listen. It answers, 
I have made this place around you, 
If you leave it you may come back again, saying Here.

No two trees are the same to Raven. 
No two branches are the same to Wren. 
If what a tree or a bush does is lost on you, 
You are surely lost. Stand still. 
The forest knows Where you are. 
You must let it find you.

An old Native American elder story rendered into modern English by David Wagoner-My thanks to Stephen for sharing it.